Feeling 'different' & finding out about autism

Getting a diagnosis of autism varies in terms of the age at which children or adults are diagnosed, the diagnostic label given (e.g. autism, Asperger syndrome, Pervasive Developmental Disorder Not Otherwise Specified (PDDNOS) or high functioning autism) and how people are diagnosed. The process of getting a diagnosis varies as there is no universal diagnostic tool. A useful term in diagnosis is Autism Spectrum Disorder (ASD) as this covers all forms of the disorder.

Debbie, a full time homemaker, lives with her father and is 44 years old. Ethnic background/nationality: White British.

Well I had I had got a job in office work, but I was very badly bullied and it ended up that I had to – my employment was terminated due to ill health and my mum realised that something wasn’t right and well she had always had some sort of thought that I could be on the autistic spectrum. Well anyway unbeknown to her I did some of my own research because I actually told the personnel officer at work that I was autistic because I just wanted to I needed a way out, because I was in trouble, you know, I was being threatened to go before the disciplinary procedure, you know and it was all… then I had done some… so I did some research myself and I sort of had me suspicions as well.

And unbeknown to me my mother had been told about Asperger syndrome by a friend of hers, because her son had Asperger's and when she was told about all the symptoms she just… she was really certain that I did have this. So we decided that we wouldn’t be fobbed off any more and that we would push for formal diagnosis.

So firstly I went to go … I went to see my GP and told him about it and he said, “Go away and let me think about it for about a fortnight.” And then so me and my mother both went back in a fortnight to see him and during that time, I had with some stuff that my friend had lent me I found the contact details of the, of the [county] and I rang somebody up related to them and he directed me to a clinical psychologist at the hospital and so when me and my mother were at the, at the GP’s, we asked, we said that we have been recommended somebody so we would like you to refer you know me to him. So he did that. We had about an eight week wait and then there was a phone call from the secretary saying that blah blah and all that and she said she would send, in a few days she would send a 48 page questionnaire for my mother to fill out, all about me.

And so this happened and actually it was the best time of my mother’s life to fill that in and to see all the concerns she had and the things about me that she knew were, you know, knew were true and then a short time after that we were telephoned asking us to go and see this doctor. So me and my mother both went to see him. In fact my mother spoke to him continually for about two hours and I had to wait in the waiting room. And then they called me in after the five, after the two hours, and yes it was as we thought; I was given the formal diagnosis of Asperger syndrome.

Me and my mother were really.. it was probably the best day of our lives. Because she had struggled for 35 years with me and she was never given any help or support you know. She described it as a lonely journey for her sometimes. And we actually went out to the pictures that night to celebrate. So that is what it was like, you know when I was diagnosed.

The road to discovery: “Getting to the bottom of the problem
A few people we talked with had gone through childhood experiencing different sorts of difficulties. Duncan had been diagnosed with dyspraxia when he was eight years old but his parents felt there remained “unanswered questions” and he was eventually diagnosed with Asperger syndrome when he was 16. A few people were diagnosed as young children and had gone through the education system in special schools or specialist units. Russell was diagnosed as a child after meeting a psychologist in a diabetes clinic waiting room.

My Mum actually thought I was deaf and blind initially, because of my problems with language processing. And visual perception. So I was like a deaf-blind child, the way in which I interacted with the environment, the way in which almost feral-like, in some ways. You know, would not want shoes or socks. Needed to feel. Needed to touch. Needed to smell. Needed to taste. Needed to lick. Needed to sniff, tap, move, to get a visual semantic reality, which I couldn't get through my eyes or ears. So obviously, you put that into an environment and then those behaviours are displayed; the way in which I used to interact was through noises. Pattern. What Donna Williams calls 'pattern theme and feel'. Which is before typical interpretation. So it's even before the literal which you hear about a lot with autism. But before the literal, before the significant. Before even getting the concrete understanding of something. That's how I was operating. And very frustrated in here.

One lady asked me "How did it feel, not to have speech?" And I said "For me, personally for me, because I can only talk from my own perspective, you imagine the deepest part of the ocean. And the words are at the bottom of the sea bed. And that was the struggle, to get all these words that were fragmented in my mind."

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Profile Info

Age at interview:

22

Sex:

Male

Age at diagnosis:

9

Background:

Jamie is single and unemployed. Ethnic background/nationality: White

So can we talk about a bit about just before you were diagnosed at school, who was it decided that you needed a diagnosis?

It was my mum.

And can you remember what happened?

Well she saw obviously, that I was a bit different and she saw, well my behaviour was a bit different to everyone else’s and I had additional learning needs and I was a bit behind in education and things like that.

And so was it the doctor who diagnosed you?

Yes, my GP. And I was referred to [building name] after as well just to confirm to that diagnosis as well.

And what did they do at [building name]?

They took me for different like tests and things like that. It was quite a while ago to remember.

Some people were originally diagnosed with other conditions such as OCD, anxiety, schizophrenia and dyspraxia. Several of them, in their attempt to learn more about these conditions, had come across descriptions of Autism and Asperger syndrome and found that they explained many of the problems they had been experiencing.

Mary is single and unemployed. She has recently graduated from university and does voluntary work. Ethnic background/nationality: White

Well I was diagnosed with Asperger's Syndrome last year in 2009, March 2009. Basically I already suspected there was something different about me, because I grew up without really being able to make friends or properly socialise with people in the usual way.

So although I was at university the, and I could go to university I think, because it was kind of familiar, so I wasn’t scared about going to university or anything. It was just other things I was really scared of so… So my parents told me I must get, you know, must see a psychologist to get that counselling and I kind of reluctantly agreed, because I didn’t originally want to, because I didn’t want to be seen as, I just didn’t want to be seen as different. I wanted to fit in. I didn’t think I had anything wrong with me, and I was really very much on the defensive of anyone who suggested that. So it was kind of gradually that I realised that yes, there is something, that’s kind of different about me, and my parents are right. So then I eventually agreed to go and see a psychologist and get, you know, counselling. And then, originally I was diagnosed with OCD which wasn’t really much of surprise because I knew what that was, but then I knew that that wasn’t really the whole story.

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Profile Info

Age at interview:

47

Sex:

Male

Age at diagnosis:

45

Background:

John is single and an unemployed admin worker. Ethnic background/nationality: White mixed UK/Irish

I mean it’s not actually that long ago, I’ve been diagnosed as an adult only a few years ago, by a local psychiatrist here working in the NHS, the diagnosis being mild Asperger's Syndrome. And, not a diagnosis that surprised me, I was perhaps surprised that the psychiatrist picked up on it. But you know, a diagnosis really that I’d almost concluded myself beforehand that that was a condition that I did suffer from, so not surprised. It’s just really an official confirmation of something that I understood in my own mind to be the case already. But it’s literally only, only within the past few years that a diagnosis has actually come.

Yes, and I mean speaking to somebody who’s had you know, a fair bit of contact with mental health services over the years, you know, I’ve found myself in the past being apparently on the verge of a false diagnosis of schizophrenia, this is going way back into my later teenager years. So, you know, it’s the advance in understanding within the psychiatric profession, you know, of Asperger's Syndrome that’s you know, given the correct diagnosis now where they were really going down a completely separate path, and a wrong path in the past.

What was it about that you were like at that point that, that made them think you may have schizophrenia?

That’s hard to judge, I mean maybe my sort of vagueness at the time. Maybe my apparent fixity of thought. I mean I can’t think it was anything that substantial. I mean I think they really were barking up the wrong tree as far as I could see. Obviously I was quite socially withdrawn, maybe as an interviewee to them, you know, I was not very clear about things. I think they really were barking up the wrong tree completely. And I was, was quite alarmed at the time, you know, obviously that that was in their thinking. They never did say that I was… you know, they never did come to a firm diagnosis, but that was their thinking. You know, so and I discovered that a) talking to a psychiatry social worker, and b) you know, eventually getting hold of my medical records some years later. But I can’t think that they were working on anything particularly substantial at all, and I think they were completely you know, going down the wrong pathway and a GP of mine said that was quite common at the time was to view people with Asperger's as though they were schizophrenic. But it’s quite concerning that they could potentially make, or would be going in the direction of making such a blunder.

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Profile Info

Age at interview:

26

Sex:

Male

Age at diagnosis:

24

Background:

Sam is studying for a PhD. Ethnic background/nationality: White British

In relation to diagnosis, I’d actually been diagnosed many years earlier as… well it was only a suggested diagnosis of schizoid type personality disorder. And when I saw this, I remember, getting it at the time, and the psychiatrist really wasn’t very nice about it to be honest, he sort of, his exact words were, “This will end of a lot for you” which was a rather cheerful way to introduce someone to this.

But I went home and read about it, and I just wasn’t convinced. It just didn’t strike me as a) particularly good signs, and b) suitable for myself. But when I actually saw autism and saw some of the characteristics of it, it’s just so, it’s just applicable, it just worked. You know, things, things which I’d never understood about myself and been trying to understand for many years as to why I was different, trying to explain about all sorts of various theories and I appreciate that none of them were really working and then suddenly I just saw ‘autism’ and thought ‘oh wait a minute’, you know, the problems in my head quite simply that’s, that’s where it’s all come about. Although I very much enthusiastically embraced it; indeed I got the diagnosis in about six months, and I remember deciding that even if they said I wasn’t autistic, I decided that I definitely was, because it just fit so much there was no particular issue, and they definitely diagnosed me.

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Age at interview:

39

Sex:

Male

Background:

Ethnic background: White British

So quite a wide range of things to try and understand the condition, really. Because just trying to help myself understand.

Understand the human condition?

Yeah. Yeah. Because I mean I did find… I did find it very strange, and I mean at one point I did try to section myself, because life was so painful. But that actually turned out to be quite a good experience actually because I mean I actually got to then look at the mental hospital and see people are genuinely mentally ill. And that was sort of a hard moment but, okay, different, not ill. So I knew that much. That sort of 19, 20 - 19 or 20 years old, so. And I, I had a good chat with one of the psychiatrists there, and he said, you know, you're too sane to be in, wanting to be doing this. And it's like 'yeah, yeah'. Although being sane is sometimes a problem. Being [Name] a problem because you have to accept a certain amount of irrationality in, with people. Because that's part of the lubrication of society, is that you have to accept a certain amount of why, of the humorous and …distance and everything else. It's, there's no clear, you know, try to be rational, try to apply things, it just doesn't work for, work. So you have to become more tolerant of that, which I've sort of become calm over time. But it's been a, a long process.

“My aunt sent some stuff about Asperger's”
The recognition by other, non-medical people - family friends, relatives, school or college staff - that the person may be on the spectrum was striking. People talked about receiving newspaper articles or leaflets from friends or family members, or a work colleague suggesting they may be autistic. The leader of a psychotherapy group suggested to John that he might be on the autism spectrum. John L realised once his nephew was diagnosed and he had been told for years his nephew was just like John L had been growing up. Paul I got thinking after he realised he felt “like a resident” when working as a care worker in a residential home with learning disabled people.

Peter, a retired scientist and Myrtle, a retired actress, have been married for 57 years and have one son aged 53. Ethnic background/nationality: White British

But what also happened is I found a leaflet at our surgery on Asperger syndrome and I went through it and found 90% of the symptoms they discussed fitted me and there was a phone line to a group called Asperger's support for families in [county]. And I got in touch with them and they have given me literature and suggested various matters I should read and so on. And I was amazed to find that many, many of the things which both of us found very strange that I had done or the way I had behaved fitted in this sort of total disregard of what was going on around me.

It was a sort of strange coincidence on Monday when I saw my counsellor she said to me, “Do you find many people bump into you in the supermarket?” And I said, “Yes.” And she said have you ever thought that you are bumping into them because you don’t look round, you don’t observe them. And I said, “You are probably right.” And there was a case this morning. We were…Myrtle just sort of said, “Didn’t you see the woman.” And I said, “No I didn’t.” And she was what two feet away from me. Because I don’t know what I was thinking of, but certainly I wasn’t think about anybody being there. I was thinking about, “Oh we have got to get some milk that we can freeze. You know it doesn’t mean that I can only concentrate on one thing. I can only put it this way; I can concentrate on what really interests me.

I done mainstream education without problems but then it was only around the time that I was learning to, I started learning to drive that I my aunt sent some stuff through about Asperger's and it seemed to coincide with the fact that my driving instructor then suggested that I transfer from manual to automatic. But it was only when my Mum showed me the stuff that my aunt had sent us, and that is what really got the ball rolling so to speak.

What was it about the manual cars that was a problem?

Sort of the coordination between the gears, the clutch and everything else, you know, and driving at the same time.

And what was it in the information that your auntie sent through?

Different kind of articles and everything from magazines. The… I can’t remember exactly but it is different stuff that she found that she sent through. We went to, my Mum went to my GP who happily referred me on to... I think it, what was it, yes, I think it was someone in (town), well they couldn’t diagnose me so they sent me back to (town) and then my GP had to get someone from, a psychiatrist from (town) to say that he was happy for me to get a diagnosis and then I was sent all the way to (town) where they finally diagnosed me, after a year and a half.

The reason I entered the diagnostic system was that when my youngest started nursery school I helped out with reading because one of the teachers I had known for a long time asked me to hear children read. I trusted her and she made me feel safe. My eldest said it would be a good idea for me to do.

Anyway I heard children read and because I look at things how I do I was given children with problems to help and explain things to (still unaware I was Asperger's). I was then asked to support, one to one, a child with Asperger’s.

As part of this the school asked me to go on some Asperger courses so I could support the child and on these courses I was very confused why they said some of the things I think are normal were not how they saw things, I would go back to school and talk to the head and teacher I trusted who would ask me what I thought of the courses. Then on one I was so far away from how others operated (this course was run by Asperger trained and daily working with people) that they commented without thought - I think they were surprised at my responses. I went back to school and told the head who talked to me and the outcome was 'the staff in the school were convinced that I was on the autistic spectrum quite noticeably' and she added that she hoped I would see some traits in the courses she was sending me on.

I thought about it for a few days and then she asked me if I had ever thought about getting tested so that maybe I would not feel so confused and scared. So I went to my GP whose husband happened to have an interest in autism (I did not know that) and she looked at my medical history (she was a new partner in the practice) and said in her opinion there was a very high probability I was on the spectrum and that getting a formal diagnosis, in her opinion would help me and open up access to help for my self harm and that people would then understand I found communication hard. I stim under stress and can never look at someone when I talk to them and often wriggle etc) and would not assume I was mentally unstable.

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Profile Info

Age at interview:

58

Sex:

Male

Age at diagnosis:

51

Background:

Richard, a computer programmer and Sue, a healthcare worker, have been married for over 30 years and have a large family. Ethnic background/nationality: White British.

So if you would just like to start by telling me your experience of having Asperger's then.

Richard' Well for most of my life I didn’t know what it was. Seven years ago.

Sue' Six or seven years ago now.

Richard' Well around seven years ago I was diagnosed. So the majority of my life I didn’t have Asperger's. I was just the way I am. And a friend of my wife read a newspaper article, showed it to my wife, who then persuaded me to consider the diagnosis and eventually I was diagnosed. I don’t know whether it was more your experience of living with me than it was now, because I mean that would be valid from beforehand anyway.

Sue' I thought it was important to get a diagnosis even though having read the article I was quite sure that that described Richard quite accurately. When I pressed my GP about it, he basically said, “Well if you think that is what it is, why do you need a diagnosis? Why does it have to be official?” Basically from my point of view it made quite a difference to me that it was a matter of living another 30 years with somebody with a disability or living another 30 years with somebody who apparently didn’t care. So I felt it was important to get that clarified really. So that I could find my way in the situation really, find a way to deal with the difficulties that we had been experiencing right through our marriage, up to that point.

The internet allowed many people access to information and descriptions of autism which helped them in their search for answers. Laurie suspected her son was autistic, started reading about it and realised that what she was reading was “incredibly similar” to her, so decided to seek a diagnosis for herself.

It was about three or four years ago I think. I was 23. Was it? hm. Yes. I was about 23 anyway. I am 27 now so. Yes, I mean just sort of after many years of kind of seeing psychiatrists, doctors, nobody really knowing what it was that I had. Just sort of being told I had depression. I had social phobia. Anxiety. All these things, but not really kind of getting to the bottom of the problem. Every time I went to see someone they didn’t kind of… They couldn’t give me a reason why I was feeling like that, you know, if you are depressed, yes, okay, I am depressed, but why am I depressed? You know, why, why do I feel like this? It is not like…. I mean I got bullied at school but I didn’t feel like it was enough to explain why I felt like I did.

And it just happened that I was talking to someone online, and they suggested to me ‘have you heard of Asperger's?’ And I thought, well, yes, actually I have because I had seen a programme on telly, Luke Jackson and his family. I had seen the documentary about their family and at the time, which, you know, was a couple of years before this, I had sort of thought I really relate to a lot of this, but I haven’t got autism. You know, I was going to my Mum, you know, what, “I can relate to a lot of it. But I haven’t got autism have I?” You know. But then, so after speaking to this person, you know, who said “Oh it sounds like you should look into it.” You know. “If you are, if you feel like that. You know, you should look into it.”

So me and my Mum basically went to the library, ransacked the library for all the books we could find found the Tony Attwood ‘Guide for Parents and Professionals’ or whatever it is. Found Luke Jackson’s book, read them, and just basically burst into tears and went, “Oh my God, this is what I have got.”

Went back to the counsellor who I was seeing at the time, who was not that good. Suggested Asperger's. He said, “No I don’t think you have got it.” So we just went into all the great detail of why I had got it, and he said, “Okay,” referred me back to the psychiatrist that I had seen previously, who went, “Oh my God, yes, why didn’t I pick up on it?” Apologised profusely for sending me to all manner of group therapies and things which just made me even worse. Referred me to Cambridge who then diagnosed me basically.

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Profile Info

Age at interview:

37

Sex:

Male

Age at diagnosis:

36

Background:

Damian is a student. He is single and has one child, aged 7. Ethnic background/nationality: British

Well do you want to start from when you first received your diagnosis of Asperger Syndrome or realised you had it?

I first realised after, well, it’s probably about five, six years ago. Coming up to six years ago, when my son was coming up to two years old, and his mother was starting to think that he might have Asperger's, and then, so I started looking into it. He turned out to be classically autistic, but when I was reading the books about it and things, the stuff about Asperger's related a lot to me.

And so I kind of thought to myself, I probably was, and it was mainly through reading autobiographical accounts of people because I didn’t really relate initially to the diagnostic thing, but more to people’s stories. And then, I decided after a while to, with a lot of people I met saying, oh you may as well see if you’re diagnosable, kind of thing. And then it took quite a while but then I was only officially diagnosed last year at the [hospital name].

What was it about the diagnostic criteria that didn’t really fit?

Imagination and the idea that you don’t have empathy and understanding of people. That’s the thing that doesn’t quite work in the same way as others, but I don’t agree with the whole theory of the mind theory. I know people can struggle with it, or express it. But I think I’ve got a perfectly fine imagination, a very vivid one, and I think I can understand other people quite well. So in some ways I miss out on things, so... the sort of social niceties, but I just think if it’s kind of mis-worded slightly, it’s kind of described as a disorder and an absence, a lack of a difference from normal but I think normality is a fallacy anyway. Complete gobble-de-gook to me. And so, as a description, and way of labelling someone. I know that’s how they work, and it fits more than other criteria do, but... I do have obsessional interests and stuff like that. And in some ways I’m rigid and stubborn, but in some ways I’m very flexible and adaptable. So… I just don’t like to be boxed in that way.

But reading the autobiographical accounts it made a lot more sense. It was how people felt at school. How they experienced other people and what they liked and disliked. A find of lack of imitating others, the non conformity, the problems with authority figures, and then you get labelled with oppositional disorder for that and it’s perfectly rational behaviour in my mind and it’s just this kind of thing and it’s just to me a way of thinking and one that has its advantages in my mind.

I know that I have abilities that many do not, but then I think a lot of people with autism are under estimated on what they’re capable of doing. I don’t really like the whole high low functioning kind of thing. People are themselves and we are all different and have different potentials. I’m clumsy and cackhanded, my son is classically autistic, but physically he can do things I can’t do. He’s got horse riding grade one, and I’d be terrified to go anywhere near a horse. So it like depends on what you’re comparing. We’re all different.

I don’t like the kind of negativity around a lot of the labels because they don’t see those strengths in people, or the positivity. I think that’s why also autobiographical things I tend to relate to a lot better.

The Sainsbury book particularly is a great one, that is very good. It started off with this list of quotes from her school report, and it was like reading my own school reports. And so, oh yes, she’s been where I’ve bee

Some people were diagnosed after having difficulties at work. One man was facing a criminal trial while Debbie was badly bullied at work and was threatened with a disciplinary procedure.

Peter lives on his own and works as a kitchen assistant. Ethnic background/nationality: White Scottish.

Do you want to start by telling me about when you were diagnosed with Asperger's sydrome.

I had a bit of trouble in my last job and I was promised it wouldn’t go to Court, but somebody in my work went to the newspapers about what happened. So I ended up going to Court and getting a criminal record for it. But my mum persuaded me to go to a psychologist just to see what was going on in my mind and everything else at the time of the incident and he said that I could have autism, so he would refer me to a specialist psychologist who deals in autism and Asperger's and he did a few tests and then he confirmed that I did.

Originally April 2006, so it was last April that I, approaching eighteen months ago now. I think it was sort of something that I felt I sort of had to face up to and stop sort of sticking fingers in the ear and pretending it wasn’t an issue, which I had more or less always done previously. I had been very sort of adamant; everything is fine, everything is normal. I will fit in. I will behave in the manner that is expected I will do all sorts of things that everyone else does and just pretend that this isn’t an issue. And I think on the whole I was reasonably good at that. But it, you know, sort of day in, day out, sort of doing the, I think the best way to describe it, would be sort of, you know, putting on an act and you know, playing that role, just became sort of mentally exhausting and eventually reached a point when I was working where I just thought I can’t go in this week, no, just not up to it. Not happening. So I didn’t book any shifts. I didn’t go in. And then the next week, it was no I don’t feel up to it. And that sort of went on for, you know, a few months.

And, you know, sort of a year later I sort of realised, okay this is not good. [ahem] You know really had to kind of face up to this as being an issue and I decided that something had to be done about it, and so it would have been in sort of like the January, I started looking into going for a diagnosis of some kind.

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